Dear nursery…..

My baby is not a baby anymore, he’s not even a toddler, he’s a little boy now and the time to start nursery is looming! It’s strange when you don’t go through the crawling, cruising, standing up, first steps stages you kinda just look one day and all of a sudden your baby is a little boy and his chubby baby face has changed into the face of a mischievous little boy! I stumble through the everyday with my little sidekick always with me but that’s about to change as he enters the world of nursery. Part of me is celebrating – this is a milestone we did not know if we would get a chance to see and yet the other part of me is filled with fear. I will probably never be ready for this giant step but my little boy is and so as I hand in the enrolment form; dear nursery, there are a few things you should know:

1) The additional needs box is too small!

I’m sorry that my little boy has a novel of additional support needs and that my writing looks scribbly trying to fit them in the box in block capitals with black ink – you see, I’m terrified I miss something out, terrified that you might not know that his head could drop and he needs help getting it back up, terrified that you won’t realise he can’t have the same crunchy snack as everyone else and that the snack he can have will need cut into minuscule pieces, terrified that you won’t lift him the way he likes, terrified that his tummy button may get pulled out as other boys & girls make friends with him, terrified that you won’t know how much cushions & rolls he needs to make him comfy and terrified that you might take your eye off him a second too long and he gets hurt! So I’m sorry for using up more space than just the allocated additional needs box.

2) Snotty noses give me the fear!

I know you will think I’m a paranoid mummy when I tell you colds & flus are life threatening for my boy. I won’t be sending him to nursery if I even detect the slightest of sniffles! You see, we’ve spent so many precious weeks in hospital fighting chest infections and I’ve seen my little warrior fight for his life too many times. I switch to high alert, crazy mama the minute I see a child with a snotty nose or a tiny tickly cough! Please don’t think I’m being over protective if I ask you to make sure you gel your hands or ask you to disinfect my sons chair and tray for the hundredth time – I’m not trying to be annoying or add to your already huge workload – I’m just trying to keep my baby safe.

3) I know you’re all trained to the highest standard….

You’ve all got qualifications, experience, skills and I know you love the kids you look after but my boy has hardly spent any time away from me and he is our little miracle – I might need you to reassure me every so often that you’ve got his care under control, I might need you just to tell me that my boy is safe and well and that he’s doing ok!

4) I know I’m asking a lot…..

I will become one of the mama’s you spend more time with than your actual families – I know my son has lots of special equipment and will need lots of additional support just to get into the nursery building, I know you will need to put extra things in place just to care for him for the few hours he is there but above all can I ask one more thing? That his time at nursery is the most fun it can be, that he will have loads of new experiences, that he will be included in every aspect of nursery life?? Every mummy wants that for their child and in that I’m no different! I know my heart will be in turmoil as I drop him off and wheel him through the doors to meet his friends and it would make me happy to know that while he is away from me for a few short hours he is having the bestest fun with all the other kids in his “different kind of normal”

So nursery, I’ll be seeing you soon for a multitude of meetings, we’re about to become very close friends but until then I’ll enjoy having my baby by my side 💙

Yes please – a spinal jacket & more appointments!

As I packed our bags for a routine appointment at the spinal clinic I was thinking to myself it looked more like we were packing for a weekend break rather than an hours appointment. There was a change of clothes, shorts & t-shirt for the required x-rays, wipes & changing bag, a feeding pump with extra milk in case of any emergencies, a spare button just in case the situation arose where the one in place fell out, a bag of toys for the waiting times, a bag of snacks for Zac & a bigger bag of snacks for me & Craig, the “folder” containing all the medical notes & contacts, the massive push chair with jumbo wheels & finally the blue badge so we could get parked without having to circle the car park 50 times!!

We check in to the hospital (yes when you’re a regular you check in via a touch screen that uploads all your details) & the screen tells us to attend “height & weights” clinic first. I sighed as I saw the screen thinking “here we go again”

nurse: Zac we’ll just sit you up on     the scales

me: Zac’s condition means he can’t actually sit by himself so he can’t get weighed on the normal scales

I have to go through this every time we visit the hospital! We wait a bit & they decide they don’t really need a weight so we now make our way to the x-ray department.  We get to x-ray put on protective jackets, zac’s gowned up & shouting “cheese” for his special pictures while the machine flashes across his little body. I catch a glimpse of the image as it flashes up – i’m no expert on the spine but even I could see from the quick flash that Zac’s spine did not look like a spine should…….

So back to the spinal consultant who examines the images & says “time for a spinal jacket”. I think to myself “yeah why not we have a growing list of medical supplies & equipment let’s add a jacket to the mix”. Off we go to yet another clinic to get measurements & a spinal jacket will be made. We tell Zac it’s an adventure, a part of the hospital we hadn’t discovered yet. The orthotist  explained the process & all I could see was the calendar at home on my kitchen wall filling up with more appointments – appointments to fit into our already busy schedule – physio, respiratory clinics, health visits, neuro clinics, injection days, occupational therapy & now spinal jacket clinic!!

In all seriousness my heart was now breaking at the thought of my baby wearing a brace for most of the day just to keep his spine straight, my heart was breaking at him having to face yet another challenge. And no matter how busy the calender, I knew we would attend each appointment with a smile, telling our son his new jacket will be a piece of superhero armour, giving him the super power of a straighter spine, it will be another part of his scaffolding that makes him a warrior. It’s just another part of our “different kind of normal”.

So we left the hospital a few hours later with all our bags & equipment plus “a new spinal jacket & a whole lot more appointments”.

The Journey Begins

Thanks for joining me

I’m Amy, Mummy to two boys who make daily life an adventure.  My youngest son, Zac, was diagnosed with Spinal Muscular Atrophy Type 1 in November 2016 and so I began the journey of being a special needs mum.  Life changed in a big way and we began living our “different kind of normal”.

My blog is a place to share my thoughts, experiences and emotions on the crazy daily life of bringing up two boys in “a different kind of normal”